We held a meeting at our home last night for an organization in which we are involved. Children were running around or playing with toys while the adults began the meeting. Monica sat with us when we opened with prayer … Continue reading
Monica has been working in the kitchen of a nursing home since February. Technically she is not employed by the nursing home because she is in a Community Work Experience program through an agency that provides job training for people … Continue reading
Monday morning chores.
No dust can settle on this girl!
Wake up. Get dressed in work uniform. Eat breakfast. Brush teeth. Put lunch in backpack.
Empty and load dishwasher.
Gather laundry from hampers in the bedrooms. Take to laundry room and start a load. Whites first.
Take the city-issued garbage and recycling bins to the curb.
Practice piano – 10 minutes.
While watching for your ride, practice Italian lessons with Duolingo on the iPad.
When van comes, head out the door. Greetings to work friends! Off to work.
And it’s only 7:45 a.m.!
Jean Vanier, founder of L’Arche, felt everyone, regardless of ability, should be given an opportunity for spiritual growth and expression. Out of that conviction came a retreat and small group experience called Faith and Sharing. In many cities in which … Continue reading
At any gathering, you will catch Monica taking the tabs off soda cans before putting them in the recycling bin. She is always on the lookout! Last week, we took her recent collection to Ronald McDonald House for their Pull … Continue reading
Some of Monica’s mom’s friends were planning a fashion show fundraiser. The daughters were going to be the models. Then one of the girls thought of Monica and wanted to include her. The girls had tea at Sally’s house and tried on vintage dresses. Then they all went to The Limited and tried on new clothes. The fashion show was about femininity and elegance and how they have been expressed in our clothing. Also how the clothing of other countries influenced clothes in the United States.
The girls arrived early on the day and practiced walking on the platform.
Then they all got dressed in a special room. There were lots of clothes and accessories. The girls helped each other.
The show started with some very beautiful and very old dresses.
Later there were the dresses from other countries. Monica’s first dress was a dirndl showing the influence of clothing from Austria. (Perfect for that Sound of Music fan!)
After the vintage dresses, everyone had lunch. Monica was seated with the other models, not her mom!
After lunch, the girls modeled the new clothes from the Limited.
Monica knew just how to stand to show off the dress she was wearing! It was a lot of fun!
- When Monica was little, I was sometimes overwhelmed with medical questions. Monica just had more issues than our other kids. Well, it does make sense. The statistics from the CDC show about 50% of babies with Down Syndrome have a heart defect, up to 75% may have hearing loss, up to 50% have sleep apnea, about 50% will require glasses, and up to 60% have eye diseases like cataracts and many have digestive tract issues. Over the years, Monica has proved that her medical events are just more adventures. I have included details about her open-heart surgery, frequent ear infections, broken ankle, and thyroid issues in other blog posts. She continues to charm her medical providers and her positive outlook makes these challenges easier.
- When each medical question came up, I found myself searching for someone who had been through it before. How do you prepare a kid for surgery? How do you keep them from losing their hearing aids? So, I am going to share our latest adventure in case someone else is wondering….what if my child with Down Syndrome has to have an Endoscopy or Colonoscopy?
- If you aren’t interested, feel free to check back for the next post!
- Monica has been having frequent loose stools and with Celiac Disease common among people with Down Syndrome, not to mention that she has two brothers with Celiac, I thought we ought to do some testing again. She had had the blood test for Celiac in the past, maybe 10 years ago, but that doesn’t completely rule it out. After doing the new and improved blood tests, and including the newer genetic test, and stool tests, the gastroenterologist was pretty sure it could not be Celiac Disease, but couldn’t say what was wrong without ‘going in’.
- The prep for the endoscopy and colonoscopy is similar to adults, but they actually try to be a little gentler with young people, spreading it out over a longer period. So beginning on a Thursday morning, Monica could have only clear liquids, a dose of stool softener, and then in the afternoon a series of Gatorade with laxative stirred in.
- This is when the fun begins.
- I highly recommend having brothers who will play games and yell ‘Chug! Chug!’ to keep the afternoon flowing…
- Monica was such a good sport, giving reports after each trip to the bathroom.
- She woke during the night to go a few times and had some stomach cramping, but really slept almost normally.
- Friday morning, she could have only a few sips of water with her thyroid medication.
- She packed her own bag for the surgery center. Games, coloring books, markers, prayer books, a favorite stuffed animal, stationery and her address book, photo books: enough to last weeks.
- On arrival, she changed into the hospital gown folding her own clothes neatly into the bag provided by the surgery center.
- I refused the pregnancy test for her and had to sign a form saying so.
- The anesthesiologist asked her if she was too old for stickers and then decided to bring them anyway. Disney princesses.
- She was trying to show the nurses some photos in her phone of her older brother’s trip to Rome, but we observed her speech was becoming slurred – the Versed was working already.
- Soon, she was rolled away.
- When they called me back in, she said, “I had a great nap!”
- They let her choose Diet Pepsi and Oreos to help her wake up.
- The gastroenterologist brought photos from each part she examined during the procedure. Monica was fascinated. She tried to match the photo label with the diagram showing where it was taken.
- She was back to herself within an hour and we were headed home. She had no after effects from the procedure or the anesthesia!
- When we know more about results, I can write those too.
Monica had the privilege of traveling to England to visit her Aunt Terry. She was great company for her mother and a wonderful guest. She took photos of every new experience but that is too many to include here! We will share just an overview of the delightful adventure.
We drove across the Ambassador Bridge into Canada and noticed lots of wind turbines along the highway. We checked in at the Toronto airport. We charged our phones and enjoyed the iPads for travelers. The flight to London was smooth. Monica brought knitting, books, workbooks and her iPad. She was too busy to sleep, but when she got on the train out of Gatwick airport she gave in to a few winks.
We changed trains at St. Pancras/Kings Cross. We bought postcards and stamps there.
Monica’s Uncle David picked us up at the Scarborough train station in a car with the steering wheel on the right side and drove on the left side of the road!
Monica loved relaxing and sharing a cup of tea with her family there, but still did her best to help out with emptying and loading the dishwasher and setting the table.
Since we were there for Mardi Gras, Uncle David took us to the Scarborough events for Pancake Day. The Pancake Races had teams from different organizations running obstacle courses while flipping pancakes in crazy costumes. Then we walked to the sea to see Skipping day in which the children remember skipping with the old fishing ropes when the fisherman replaced them with new.
For the first Friday of Lent, Uncle David brought in Fish and Chips and Mushy Peas!
Monica’s cousins arrived on the weekend and we celebrated a birthday together.
Monica was the one who knew how to set the timer on the phone to take a group photo!
On a very windy day, we drove around Scarborough castle and saw the north beach.
After a week of really getting to know her aunt and uncle, we had to leave. We took the train back to London and Monica’s cousin’s girlfriend met us for a walking tour of Leicester Square, Trafalgar Square, a view of a guard and the entrance to Buckingham Palace, then a stop at the Treasury where her cousin works, a peek at Big Ben and the Eye.
Then supper and good night’s sleep before the Uber taxi took us to the train back to Gatwick.
It was a very long flight with an unplanned fuel and de-icing stop in Quebec City. Monica played her President’s game on her iPad so many times she hit a new high score.
Back at Toronto airport, we scraped the snow off the car when we found it in the long term lot and headed for home. We were so happy to be greeted by Monica’s nieces and nephew!
Everyone knows Monica loves the Sound of Music. Our good friend Melissa made a dream come true this weekend. Melissa organized a trip to Columbus to see the Broadway production of Sound of Music. Monica packed her bag herself and could not wait to meet up with the girls on Saturday. We were impressed that she remembered to pack things like her earplugs so she could go swimming, a little container to take her thyroid medicine and vitamins, and her charger for her phone. There were four chaperones and four young ladies about Monica’s age on the trip.
They stopped at a Dunkin Donuts for a break and arrived at the hotel mid-afternoon.
They had a blast in the pool. They enjoyed the Happy Hour snacks.
They got all dressed up and headed out to the Ohio Theater downtown.
Monica described everything to us. The theater, the orchestra, the set, the beautiful voices, the children! She loved everything about seeing the live performance. Afterwards, they positioned themselves where the actors came out and Monica got to meet the woman who played Maria von Trapp. What a thrill for her!
When they got back to the hotel they had pizza and cookies and giggled in their pajamas.
In the morning, they all went to Mass together at St. Patrick church and out to lunch at Spaghetti Warehouse.
This weekend excursion is something we never imagined would happen. We never thought we would have an opportunity for Monica to be included and taken care of so well. We could relax at home and know she was safe and having a wonderful time.